Guest guest Posted April 26, 2007 Report Share Posted April 26, 2007 were in California but why do they think its fmf? that's what we are waiting for tests on. my son has Sicily ancestries and mine are Italian. they say both parents have to have the gene. i am a little worried because his grandmother on his dads side died of kidney failure and my Mom has problems she has already had her spleen, and gallbladder, removed. her white blood cells are off and she just had a nee replaced all the things they say now is fmf. they used to do all that without realizing it is fmf. but she to wont listen to me she says hers if not inherited I think it is. thanks chicks ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2007 Report Share Posted April 26, 2007 I can't speak for NYC, but close. LIJ Schneiders Children's Center is not far from NYC and DR. Beth Gottlieb is wonderful. Great personality, thorough exam, wonderful to my son--and she will spend as much time as you need answering your questions and addressing your concerns. Mom to (10) Nicky (8)-, and emily(6) ************************************** See what's free at http://www.aol.com. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2007 Report Share Posted April 26, 2007 I am greek and my husband is italian and my brother (who is 40) has had periodic fevers his whole life-- he never put it all together to figure out that he had a disease until I figured out that something was wrong with my daughter. He then realized he's been living with it his whole life. We're going to have genetic tests done soon, but our rheumatologist (in new jersey) seems to think it's FMF, so I'm now trying to find a doctor in new york city for my brother to get checked out. A little confusing I know... but if anyone has been dealing with a good rheumatologist in new york city, please let me know. Thanks! > > were in California but why do they think its fmf? that's what we are > waiting for tests on. my son has Sicily ancestries and mine are Italian. they say > both parents have to have the gene. i am a little worried because his > grandmother on his dads side died of kidney failure and my Mom has problems she has > already had her spleen, and gallbladder, removed. her white blood cells are > off and she just had a nee replaced all the things they say now is fmf. they > used to do all that without realizing it is fmf. but she to wont listen to me > she says hers if not inherited I think it is. thanks chicks > > > > ************************************** > See what's free at http://www.aol.com. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2007 Report Share Posted April 26, 2007 Where do you live? My daughter sees a top Rhuematologist who has fantastic credentials and seems a lot of children with this disorder.She is in Livingston, NJ (St. Barnabas), Dr. Chalom. 30 min. from Manhattan. She has helped my daughter, greatly. Fern. (mom to , age 7---fever free for 3 months, since on Cimeditine) curlsnyc30 <curlsnyc30@...> wrote: Anyone have a great rheumatologist in NYC who is familiar with periodic fevers?? Thanks, mom to alexis (probable FMF), liza and julia --------------------------------- Ahhh...imagining that irresistible " new car " smell? Check outnew cars at Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 26, 2007 Report Share Posted April 26, 2007 sorry, didn't realize you were looking for a " non " pediatric rheumotologist. I will ask around. My brother in law is friendly with several md's in the city. Fern (mom to , Livingston, NJ) curlsnyc30 <curlsnyc30@...> wrote: I am greek and my husband is italian and my brother (who is 40) has had periodic fevers his whole life-- he never put it all together to figure out that he had a disease until I figured out that something was wrong with my daughter. He then realized he's been living with it his whole life. We're going to have genetic tests done soon, but our rheumatologist (in new jersey) seems to think it's FMF, so I'm now trying to find a doctor in new york city for my brother to get checked out. A little confusing I know... but if anyone has been dealing with a good rheumatologist in new york city, please let me know. Thanks! > > were in California but why do they think its fmf? that's what we are > waiting for tests on. my son has Sicily ancestries and mine are Italian. they say > both parents have to have the gene. i am a little worried because his > grandmother on his dads side died of kidney failure and my Mom has problems she has > already had her spleen, and gallbladder, removed. her white blood cells are > off and she just had a nee replaced all the things they say now is fmf. they > used to do all that without realizing it is fmf. but she to wont listen to me > she says hers if not inherited I think it is. thanks chicks > > > > ************************************** > See what's free at http://www.aol.com. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2007 Report Share Posted May 1, 2007 I am in NYC and used Dr. Barry Stein and his partner Dr. Rauscher. The latter is an infectious disease specialist. They both took care of my son Logan and are wonderful doctors. I ended up having Dr. Max April remove Logan's tonsils and he has made a full recovery. Corey > > Anyone have a great rheumatologist in NYC who is familiar with periodic fevers?? > > Thanks, > > mom to alexis (probable FMF), liza and julia > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2007 Report Share Posted May 3, 2007 We have an appt with a Rheum in Dallas. Please tell me how that Dr. help your daughter. and what we should expect the Dr. to do when we go and see her. Thank you, Leanne fern rosenstein <ferniespecial@...> wrote: Where do you live? My daughter sees a top Rhuematologist who has fantastic credentials and seems a lot of children with this disorder.She is in Livingston, NJ (St. Barnabas), Dr. Chalom. 30 min. from Manhattan. She has helped my daughter, greatly. Fern. (mom to , age 7---fever free for 3 months, since on Cimeditine) curlsnyc30 <curlsnyc30@...> wrote: Anyone have a great rheumatologist in NYC who is familiar with periodic fevers?? Thanks, mom to alexis (probable FMF), liza and julia --------------------------------- Ahhh...imagining that irresistible " new car " smell? Check outnew cars at Autos. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 3, 2007 Report Share Posted May 3, 2007 Leanne, The rheumatologist will take a lot of blood work to decide what exactly is going on with your daughter and what kind of exact disorder she has (i.e. Mediterranian Fever, HIDS, TRAPS, etc.). Once it is determined...then, the doctor will provide you with a plan. Our doctor felt that cimeditine would work with her disorder. PFS. And, it has....our first real break in years. I hope that is somewhat helpful. And, good luck. Fran would probably be able to educate you better than myself. But, those are the steps... Good Luck and Best Wishes, Fern (daughter to , age 7--diagnosed at 3) Leanne <leannedavis@...> wrote: We have an appt with a Rheum in Dallas. Please tell me how that Dr. help your daughter. and what we should expect the Dr. to do when we go and see her. Thank you, Leanne fern rosenstein <ferniespecial@...> wrote: Where do you live? My daughter sees a top Rhuematologist who has fantastic credentials and seems a lot of children with this disorder.She is in Livingston, NJ (St. Barnabas), Dr. Chalom. 30 min. from Manhattan. She has helped my daughter, greatly. Fern. (mom to , age 7---fever free for 3 months, since on Cimeditine) curlsnyc30 <curlsnyc30@...> wrote: Anyone have a great rheumatologist in NYC who is familiar with periodic fevers?? Thanks, mom to alexis (probable FMF), liza and julia --------------------------------- Ahhh...imagining that irresistible " new car " smell? Check outnew cars at Autos. Quote Link to comment Share on other sites More sharing options...
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